Potential APS diagnosis

[Figtree11]

I’ve had 2 miscarriages in the past year, and have been referred to Tommys miscarriage clinic.
As part of this, I have had blood tests done & my result has come back as abnormal for APS. According to Tommys website, I’d need another blood test 12 weeks after to confirm APS.
Has anyone had miscarriages then found out they had APS and gone on to have a successful pregnancy?

In this situation, if the second test comes back positive, this is excellent news. You have a reason for the miscarriages and a treatment (aspirin and low molecular weight heparin) which reduces your risk of miscarriage from about 90% to about 30% (other things also make a difference so your consultant will have to calculate your personal risk with your medical history.

Thank you @khaa2091 i felt a bit taken aback when my GP called me with the abnormal result. But now I’m starting to feel better about it, and like you say that having a reason for the miscarriages means something can be done (if the second blood test does come back & confirm it)

Hi @Figtree11, in exactly same position, need to book back in for a confirmation blood test in January. Hard to know whether to hold out hope for it. Good luck.

Hi,
sorry for your losses, I too have had two miscarriages at the end of last year and this year 💔
i was referred to my recurring miscarriage unit where they took loads of tests and the results for APS was through the roof.
anyway I was diagnosed with APS and more than likely my consultant believes it is down to APS that I miscarried.

not to sugar coat it but if you are APS you are higher risk throughout your pregnancy.

saying that my consultant was very reassuring. He said when I do fall pregnant I will have a consultant lead care plan and that I will have loads more tests and scans than normal pregnancies.
APS is quite unusual so I think they take It as a learning opportunity.
Consultant also said the moment I find I’m pregnant to come in and get the injections and meds etc and to start them asap, this is just an injection every day.

Even though I’m high risk it was so reassuring having my consultant say something could be done about it AND not to worry as it can be managed.

i hope this helps.

make sure you see your consultant and have a thorough chat. X

To add APS is uncommon, I’ve found no support really so please do report back.Our consultant gave us the green light to ttc but so far oct and Nov haven’t been our months x

@skippy92 i presume i will be told the same at my appointment on Friday, that I’ll need a repeat blood test in January. As soon as I got the result we stopped TTC for the time being

@Greenwoodwalls i had a read of the Tommys website & about how if I do get the diagnosis I would be high risk. It wasn’t great reading, as it made me a bit scared. But I guess at least I will be in the best hands.
I’m sorry for your losses. I’ve had 2 in the past year, and after the last we started TTC again a couple months later but also struggling to get pregnant again. But now we’ve paused any way due to the blood test. I’m being seen by Tommys on Friday so hopefully they can shed some more light

i skipped into the blood tests thinking nothing would be found so when the test came back and it was off the charts I nearly pooed my pants 😂 it’s a massive shock and you have to process it. It’s also hard because it is a rare illness to have.

i think the normal range was 1-9 and mine was 87 😬I was so upset I called the unit and the midwife was so lovely and said please try not to worry and you’ll have a good chat with the doctor.

i had a cry 😢 it was overwhelming.

however our consultant was amazing. I was dreading our appointment. I thought he would tell me it id be too high risk and that I really need to think about having a baby but he wasn’t. He was pretty certain it would be fine.

the things he said….
you’ll be looked after and I’d be consultant led
that I don’t even need an appointment to see someone for my meds and sharps because I’ll be seen immediately
that I would have lots more scans and tests
also you get a 6 week scan.

@Greenwoodwalls all I’ve had so far is my results on the nhs app. It said below 20 was normal, and mine was 57. I did have a little cry! Did your second blood test come back with the same result? I’m trying to stay positive, and take reassurance that if I do get diagnosed, that I will be well looked after.
Thanks for sharing your experience, I’m hoping I’ll also get some good advice at my appt on Friday

I think it’s good to have a cry, I think it helps process everything.
yes, the results were the same for me.
However because it was so high in the original results the second tests were a bit arbitrary as we had our consultant meeting before we even did the second blood tests.

your consultant should reassure you. You should leave your appointment feeling positive and if you don’t then they’re not doing their job properly.

This was my letter and next steps 👍 good luck x

@Greenwoodwalls thanks so much ☺️ you’ve been really helpful. I’ll let you know how I get on on Friday

Just wanted to say I was diagnosed with APS as part of my IVF work up... when I did get pregnant I had clexane all the way through and extra scans but all was fine... they didn't want me to go full term and planned to induce at 39 weeks but she arrived naturally before then! She is now 11! I was followed up by st Thomas hospital for a few years and now discharged from them and so far hasn't caused me any issues. Good luck with it all, but from my perspective definitely very manageable

Thank you so much for sharing your story with such a lovely outcome! ❤️ I needed to hear this x

Dealing with the same thing. 3 losses this year and my APS was slightly elevated. I am already under specialist care though due to losses and Dr. was very reassuring that a lot of people have abnormal first results and then go on to have a normal test 12 weeks later, it is why they have the second test and why the 1st test cannot be used to diagnose.

We will see! I do know that if the test comes back positive, there is a plan that can decrease the chances of another loss.

That’s great news @chickenfordinner ☺️

@pepperminticecream I’m sorry you are facing the same. It’s frustrating that the first test can be abnormal and the second normal. We’ve stopped TTC because of waiting to have the second test. So feels like such a waste of 12wks if it then comes back as normal. But then I know I’ll worry if the result comes back abnormal again. It feels like an impossible situation that I won’t be happy with either outcome

@Greenwoodwalls i had my appt today, she seemed pretty positive I have APS, so don’t have to wait til Jan for my repeat blood test, I had it done today. Will have a follow up in a month or so. I can also carry on TTC, with a plan of action in place. Mine differs to yours slightly - aspirin & progesterone from a positive test. And then daily herapin injections from 6 weeks after a scan

I tested positive for this in august, my second blood test recently showed I was negative - so it can happen. From what I have read even if it is positive again there’s so much they can do now to ensure a successful pregnancy.

@Figtree11 It is so hard having losses and trying to figure out what is causing them. Its hoping for answer but also hoping that everything is fine and it was all bad luck! I am having medical management for my latest loss and so was going to wait anyway before trying again. I'll redo my tests in the new year. My doctors are suspicious of APS but not convinced I have it since my first test was only slightly elevated.

Curious about any long term health impacts though, did your doctor mention anything? Trying to stay off Google and not scare myself.

@Mays2356789 interesting, I was thinking the same today that maybe my next result may come back normal. But the consultant today seemed quite sure the next result would come back high based on what my first result was. Hopefully will know in a month or so

@pepperminticecream it is really difficult. My second loss was actually a partial molar, keep being told it’s a random one off thing but doesn’t stop the worry of it happening again. And now the APS on top of that! If you don’t mind me asking, what was your level? I’m wondering what they class as slightly elevated.
So she only briefly mentioned long term, she said we’d need to know for sure for the future as I wouldn’t be able to go on contraceptive pill, can’t take HRT and always have to wear flight socks! So only very briefly touched on it

@Figtree11 I sent you a PM with my results. Hmm not being able to take HRT?! Hopefully guidance for that changes.

@Figtree11 I recognise you from other threads.
How are things for you?
I have just been told I’m likely positive for APS. I’ve also tested positive for factor five Lieden. So a double whammy :(

@Ncl31 is that based off of your first blood test? My doctor was very clear that they don’t consider a test for APS positive until there are two positive tests, and you should not take the test until you are at least 12 weeks past a miscarriage because it can cause false positives.

i had a positive APS test and then a couple months later a negative test.

Hey @Ncl31 I actually ended up being told I don’t have APS. My first test was really high the consultant was convinced I had it. Something like 52 and the level was meant to be below 10. My second test result came back being just 2! I don’t know much about factor five lieden, but I’m sorry you’re going through this.
I’m doing ok, having a rough few days. I get my genetic test results back from the 3rd loss soon

@Figtree11 @pepperminticecream
yes this was my first blood test. they waited 6 weeks to do the bloods as that is what is recommended by our haematologists.
i have a second test in another 6 weeks and then a third 6 weeks after that.
They’ve told me because I have factor 5 Leiden which is a hereditary condition it’s highly likely that I have APS too.
The most upsetting part of it is being told to use contraceptives again for at least 12 weeks.

@Ncl31 the waiting is horrible when all you want to do is try again, we too had to wait after the first blood test.
When my consultant first thought I had it she said it is very treatable with injections